Advancing care, advocacy, and research for generations to come.
The L.I.F.E. (Lifelong Insights For Exstrophy) Outcomes Survey is a groundbreaking effort shaped by the lived experience of the exstrophy community. By gathering lifelong, patient-reported health and wellness data, the survey will help create a clearer picture of what life with exstrophy truly looks like. This effort will fuel breakthrough research, guide future standards of care, and improve the lived experience of every person affected by exstrophy.
About the Survey
Most exstrophy patients born in the United States undergo surgery early in infancy for primary closure of the abdominal wall, and most require additional surgeries throughout their lives. Urology experts’ understanding of continence, sexual, fertility, and orthopedic outcomes of exstrophy patients has been mostly informed by single-center research by Centers of Excellence in North America and Europe. Due to the complexity and rarity of exstrophy, large-scale multicenter trials do not exist.
Dr. Hadley Wood and Dr. Annaliese Ionson from the Cleveland Clinic have established a unique patient-reported outcomes study in partnership with the Association for the Bladder Exstrophy Community (A-BE-C). The survey questions were designed in collaboration with A-BE-C patients, parents, and caregivers, and the goal is to assess patient perceptions, quality of life, and needs in the care for children, adolescent/young adults, and adults with bladder exstrophy, cloacal exstrophy, and epispadias. Depending upon age group, the patient (or parent/caregiver) is presented with customized, age-appropriate survey questions that include qualitative assessment of surgical bladder management, care utilization, mental health, social/peer relationships, sexual function, fertility, continence, appearance, and pain.
This community-wide survey is the first step to building a database of exstrophy patient-reported outcomes across the lifespan. Patients who take the survey will be prompted to complete it every 5 years to capture their perceptions across their life stages. Through this innovative research partnership, A-BE-C is contributing to the foundational understanding of the experience of patients living with exstrophy/epispadias.
Have questions about the survey? Send us a message!